Helping people increase their quality of life with - or without - cholesterol

LIFESTAT project - Living with Statins.

The number of Danes taking cholesterol-lowering medication, known as statins, has increased dramatically over the last few years. Today, more than 600,000 Danes take statins, corresponding to 11% of the population. More than half of them are healthy, but take the medication to reduce the risk of cardiovascular diseases, while just under half take statins because of diagnosed heart or vascular disorders.

Experts are uncertain about the effects and side effects of cholesterol-lowering medicine, and there are regular articles in the media claiming that the side effects outweigh the medicine’s preventive effect. As a result, many people with elevated cholesterol levels are unsure about whether to take this kind of medication or not. Even though a person’s cholesterol level can be measured and compared with the statistical risk of blood clots, this uncertainty has resulted in many people taking statins without really knowing if they are doing the right thing; it has also led some people to quitting the medicine, and others to dispensing with the treatment altogether.

Anthropologists Sofie Rosenlund Lau and Birgitte Bruun have been part of the LIFESTAT project and one of their key interests have been to identify which questions people diagnosed with elevated cholesterol levels should be asking their doctor if they are to make informed choices about their treatment.

The website kolesteroldialog.dk addresses some of the needs and concerns that we encountered during our interviews with people with elevated cholesterol levels. Some people may think that it’s not the purpose of research to intervene directly in what goes on in practice, but by transforming our research into a dialogic tool, we hope to be able to make people with elevated cholesterol levels more informed when they talk to their GP about medication.

Metod

The LIFESTAT project started in 2013, and for the next four years up to the end of 2017, researchers analysed the effect of statin use on the health, lifestyle, and well-being of a large group of Danes.
The project's laboratory experiments were carried out by biomedical researchers at the University of Copenhagen’s Center for Healthy Aging, while Sofie Rosenlund Lau and Birgitte Bruun, along with other researchers from the University of Copenhagen, analysed the social ramifications for people living with elevated cholesterol levels, a large proportion of whom were statin users.

As part the investigation, the two anthropologists conducted a series of in-depth interviews with 50 people with elevated cholesterol levels and, together with the other researchers in the LIFESTAT project, they sent a questionnaire out to 6,000 randomly selected Danes. The questionnaire included questions about people's habits, perceptions of health and their use of media - including where they got information about statins.
A total of 3,050 people answered the questionnaire, with about a quarter of the respondents being current or former statin users.

Results

The replies to the LIFESTAT survey showed that 30% of the current or former statin users had experienced side effects as a result of taking the cholesterol-lowering drugs. This figure is significantly higher than previous results obtained through randomised clinical trials with statins. Users experienced, for example, severe muscle pain that limited their physical activity. Other, less common, adverse reactions were headaches, fatigue and general malaise.

The anthropologists’ in-depth interviews with respondents with elevated cholesterol levels gave the researchers insights into Danes’ considerations regarding the prevention of cardiovascular disease, and provided detailed descriptions of the life circumstances of people taking statins, including their worries about risk, sense of security, confidence in the medicine, and the credibility of the available information about statin treatment.

We hope that in time, we will see a decline in the number of unused prescriptions for statins, as the website kolesteroldialog.dk becomes known and used by people with elevated cholesterol levels which will enable them to take informed decisions together with their GP as to whether to use their prescriptions, or decide not to get a prescription for statins at all. We also hope that kolesteroldialog.dk will inspire other researchers to transform their knowledge into practical tools for users who may be uncertain about other types of medicine. This corresponds directly with the current trend towards increased involvement and patient participation.

The survey showed that simply being offered medical treatment may be enough to sow doubt and uncertainty among people with elevated cholesterol levels. There were also indications that both the information from GPs and the media contribute to this uncertainty.

The researchers found that a large number of people struggle to make any sense of the many sources of information about statins; and of these very few talk to their GP about their worries and uncertainty with regard to taking statins or not.

Having gained so much new detailed knowledge about statin users' day-to-day lives, the side effects they experience, their concerns and their need for reliable information, the LIFESTAT researchers wanted to share their results with the general public by developing a dialogic tool in the form of the web page kolesteroldialog.dk, which people with elevated cholesterol can refer to in consultation with their GP when making decisions about medication.

The website, which brings together knowledge about both the health and social aspects of taking statins, has been developed in collaboration with the LIFESTAT project’s respondents and test subjects. At the end of 2017, an online version was launched, which is currently being piloted before it is made available to the general public.

Further research

In collaboration with the University of Copenhagen’s Department of Public Health, researchers are now working on implementing kolesteroldialog.dk so that the page can be used as a tool which GPs in particular will be able to refer people with elevated cholesterol levels to.

Kolesteroldialog.dk is also the starting point for a new research project, funded by the Velux Foundation, focusing on how to enhance communication between doctors and elderly patients on the use of antidepressants.

Facts about www.kolesteroldialog.dk

• Dialogic tool in the form of a website aimed at people with elevated cholesterol levels, but without any heart disease: http://kolesteroldialog.dk/
• The webpage was developed in order to increase user involvement in decisions regarding their cholesterol level.
• Contains a number of facts about statins as well as questions that the patient can go through together with his/her doctor.
• The guide was developed by anthropologists, sociologists and medical doctors involved in the LIFESTAT project.

Facts about the LIFESTAT project

• 2013-2017
• The University of Copenhagen's Center for Healthy Aging
• Researchers have studies the health, lifestyle, well-being and self-image of people with elevated cholesterol levels, as well as the available information on mediction.
• Other UCPH researchers involved in the LIFESTAT project (no longer available)
• Read more about LIFESTAT

Publications and media reviews

Christensen et al. 2016. LIFESTAT – Living with statins: An interdisciplinary project on the use of statins as a cholesterol-lowering treatment and for cardiovascular risk reduction. Scandinavian Journal of Public Health, vol 4, issue 5.

Kriegbaum, Margit & Lau, Sofie Rosenlund: Medication non-adherence and uncertainty: Information-seeking and processing in the Danish LIFESTAT survey. Research in Social and Adminstrative Pharmacy. In press.

Lau, Sofie Rosenlund & Kriegbaum, Margit: Medication non-adherence in the context of situated uncertainty: Moving beyond simple, dichotomous approaches. Research in Social and Administrative Pharmacy.

Lau, Sofie Rosenlund. Using Ethnography to Understand Patients’ Perspectives of Medicine Use: The Case of Hypercholesterolemia and Statins. Research in Social and Adminstrative Pharmacy. 2014, vol 10, issue 5, pp e60-61.

LIFESTAT newspaper, Living with statins: https://lifestat.ku.dk/livet-paa-statiner-web.pdf